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Daughter ANA +, then negative

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Lupus
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Posted 1/26/2024 7:08 PM (GMT 0)
Hello, my 14 y/o daughter has been experiencing major fatigue and tends to lose energy very quickly (she plays volleyball). In addition, she complains about odd aches and pains, headaches, and fogginess. She also seems to have acid reflux often. The doctor did a full CBC, Lipid Panel, Metabolic panel & ANA. Everything was normal, except her ANA which came back as 1:640, homogeneous. The doctor referred her to a pediatric rheumatologist (we won't see them in another month) but ordered an ANA reflex. ANA is now negative, so they didn't need to complete the Lupus panel. She has been ANA positive before (can't recall the titer) but had a different pattern. They did additional panels; the only one off at that point was for scleroderma, but it was not significant enough to diagnose. I'm wondering if ANA can go from "high positive" to negative in several weeks and if anyone else has had similar experiences. I have noticed she is less tired and less symptomatic than she was at the time of the high positive, but she did recently develop a couple of sores in her mouth that healed relatively quickly. Thanks for listening!
Posted 1/26/2024 8:17 PM (GMT 0)
I've never heard of an ANA measure moving around over time, but 1:640 isn't a 'high' number per se. ANA is mostly an indication that something is going wrong in the immune system that needs to be investigated further. Most autoimmune diseases are differentiated by symptoms, even when most have the same ANA result. You probably want to read our pinned post, Lupus 101, for more information. You are doing the right thing by seeing a rheumatologist, they will be able to get to the root of the issue. Glad she is feeling better in the meantime - I find my energy ebbs and flows, but isn't particularly related to ANA or other immune system metrics. Try not to worry too much, these things are much more understood than they were even 20 years ago!

Here is what Johns Hopkins (Maryland, USA) has to say about a positive ANA.

"A positive ANA result means that you have a higher than normal concentration of these antibodies. This is one of the tools in diagnosing lupus as well as several other autoimmune diseases, so a positive result may be related to lupus or to another disease. Or you may simply have a higher than normal concentration of these auto-antibodies that may not have any impact on your health. Even among people with lupus, ANA results can vary widely; one person can be in remission at a certain titer of ANA while another can be extremely ill at the same titer. Autoimmune diseases often have a systemic effect on the body and are very complex by nature. Your healthcare provider will interpret what the test results mean for you and may need to compare your test results as well as the severity of your symptoms over a period of time in order to make a definitive diagnosis."

Best wishes, feel free to post as questions arise!
Posted 2/3/2024 6:53 PM (GMT 0)
Thanks so much for sharing your guidance. They completed a Lupus panel. Her ANA was now both speckled and homogeneous at 1:640 each. But everything on the rest of the panel was negative. Remaining positive as you shared above. I know in my heart that whatever is challenging her at the moment is manageable, but really want to know what to manage for. Thanks again!
Posted 2/4/2024 10:48 AM (GMT 0)
ANA can go from positive to negative, from negative to positive, etc. It can go up and down too, while staying positive but varying in levels.

It can be positive for a lot of reasons, including certain viral infections, several different medications, several autoimmune diseases with lupus being only one of many, and sometimes for no known reasons at all.

So just having a positive ANA by itself isn't really enough to diagnose a disease. The rheumatologist should work with you and your daughter to evaluate symptoms along with the blood tests, and to rule out it being from any medications or viral infections. The complete health picture is needed.

Has your daughter had her iron stores checked in blood tests? Ferritin? Total Iron Binding Capacity?

What about Vitamin B12 levels? Folate levels? Vitamin D levels?

What about Complement levels (another blood test)?
Posted 2/4/2024 9:47 PM (GMT 0)
I'm sure you've read that both speckled and homogeneous ANA patterns point toward Lupus and/or Sjogren's. You rheumatologist will evaluate your daughter for the "4 of 11" symptoms to see if either of these are possible diagnoses.

Typically, four or more of the following eleven criteria must be present to make a diagnosis of Systemic Lupus.

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (non-erosive) in two or more joints, along with tenderness, swelling, or effusion. With non-erosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurological disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
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